Ways to Pay For Treatment

One of your first worries may be that you might lose (or be unable to buy)
health insurance because you're HIV-positive. New York State offers a lot
of ways to get care, and a number of protections if you have or want to buy
health insurance of your own. This chapter supplies a brief overview to
familiarize you with the programs available. It will also give you ways to
get more information about each. Knowing your
options can help you choose the best strategy.

Many people have health coverage as a benefit of being employed.
However, a sizable number of people don't have coverage through work or
aren't working right now. We will start with employer-provided health
insurance. Then we'll move on to options you can use if you have no
coverage.

Health Insurance

If you have coverage through your job, the first thing to do is to read
the policy booklet that you received when you started work (and take
notes). If you've lost it, go to your personnel department and ask for a
replacement. They won't be surprised or suspicious; people lose them all
the time. There are lots of things to check out in your policy. Three
important things to check are:

Prescription Drug Coverage: HIV-positive people can use all the
prescription coverage they can get. If you have a choice between two
policies, take the one with better drug coverage. The limited drug
coverage offered through health maintenance organizations (HMOs) can make
them a less attractive choice.

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Home Health Care: Home health care coverage pays to have various
healthcare professionals come to your home, usually after a
hospitalization. You may need a nurse, nurse's aide, home health aide, or
homemaker help (they shop, cook, and clean for you). If you ever have to be
hospitalized and you have good home health coverage, you may get out of the
hospital quicker, which means you may be back on your feet faster.

Whether your company is "self-insured": Over 90% of the
companies who employ more than a 1,000 people are "self-insured,"
and an increasing number of smaller employers are moving to this form of
coverage. This means that they don't actually have a contract with an
insurance company to provide coverage for their employees. Rather, they
took the money they would have paid for premiums and opened a bank account.
All their employees' health claims are paid out of this account. Most
self-insured employers "hire" other firms to handle their claims
paperwork. This can be confusing because most of the firms administering
these bank accounts for the self-insured employers are standard health
insurance firms, like Prudential, Guardian, or Equitable. Many use the same
claims forms for the self-insured businesses as they do for their regular
health insurance customers.

The reason that companies like to self-insure is that it exempts
them from state insurance regulations. This means that they can choose to
exclude coverage for certain disorders if they want to (many of them limit
or exclude coverage for HIV-related problems) or change your coverage with
very little notice. If your employer self-insures, it's important to know
that you may have less coverage security than someone with a regular health
insurance policy. If your employer has significant restrictions on
HIV-related care, you may want to think about buying your own coverage or
getting another job. You can get coverage of some HIV-related care through
the ADAP program (see below). The Equal Employment Opportunity Commission
(EEOC) has recently ruled against a union that limited payment for
AIDS-related illness to $5,000, and there are several similar cases
pending. However, it is unlikely that all self-insured companies will
suddenly change their policies.

In 1992, the New York State Legislature made it illegal (when
selling health insurance) to discriminate on the basis of health status,
age, sex, or occupation. This law applies only to individuals or small
businesses of under 50 employees. What this means is that if an insurance
company offers individual (or family) coverage directly for sale, they 1)
cannot turn you away because you are HIV-positive, and 2) have to sell you
the coverage at the same price as they would to someone who is
HIV-negative. If you would like to know which companies offer coverage that
individuals can buy, contact the New York State Department of Insurance at
(212) 602-0203. In order to get more information about health insurance, we
recommend that you go to insurance workshops offered by HIV service
organizations. They are aimed at people who know little or nothing about
insurance, and can answer most questions.

Pre-Existing Conditions and Portability

Some people with HIV are scared they now have a "pre-existing
condition" and that they will have difficulty changing health
insurance or jobs. In New York State this is no longer true.

First, each insurance company defines "pre-existing
conditions" differently -- some consider HIV pre-existing, while
others only consider an aids diagnosis pre-existing. Even if your health
insurance company does consider whatever you have a pre-existing condition,
the new law has some provisions that may keep you from having to worry
about this.

Second, a pre-existing condition waiting period does not mean that
you are uninsurable but that there may be a period of time when the
insurance company will not pay for any care related to your condition (in
this case, HIV infection) for a set period of time. Under the new law, the
maximum length of a pre-existing condition waiting period is 12 months, and
during this time you will have full coverage for anything not HIV-related.

Depending on your circumstances, you may not have to even worry
about a pre-existing condition waiting period. Under the new law, when you
switch jobs (or leave work and buy an individual policy), you will get
credit for the amount of time you were covered on your previous job. This
will be deducted from your pre-existing condition waiting period on your
new job or policy.

If the amount of time you were covered on the first job exceeds the
length of your pre-existing condition waiting period, you will have full
coverage from the first day of employment. For example, if you worked for
Job A for 7 months and then leave for Job B, which has a 6-month
pre-existing condition waiting period, you won't have to wait at all!

This only applies when the types of coverage at both jobs are the
same, i.e., both are HMOs, or both are regular "major" medical
health insurance plans (like Empire Blue Cross and Blue Shield).

COBRA

If you leave work, you have the right to keep your health insurance
coverage. You will have to tell your employer that you want to do this
within 60 days after leaving work, and you will have to pay 102% of the
premium each month (the added 2% covers the cost of their paperwork). In
the eyes of the health insurance company it is the same as if you were
still an employee, and you have the same coverage as when you were
employed. It is a good idea to do this if you are not going immediately to
another job with health coverage because the policy you get from your job
is of higher quality than a policy that you could buy as an individual.
Doing this is called "taking your COBRA option."

You can do this for varying amounts of time, based on why you left
work. If you simply left (even if you were fired), you can take your COBRA
coverage for 18 months. If you were disabled when you left work, you can
take your COBRA coverage for 29 months (which is when you will qualify for
Medicare). If you were covered under a family plan and the person who was
the insured employee has divorced you or died, you can take COBRA coverage
for 36 months.

AIDS Health Insurance Program (AHIP)

If you have health insurance and are HIV-positive but your income is low
or declining, you should know about the AIDS Health Insurance Program
(AHIP). Under AHIP, New York State will pay for your health insurance
premiums if you have an annual income less than $14,604 (for a single
person), are HIV-positive, and already have a health insurance policy. If
you have family coverage, you can have a higher income and still qualify.
This is a great benefit because they only consider your income, not your
savings or assets. However, AHIP will not buy you a health insurance policy
- you must have it when you apply. This program is designed to help people
who may be able to work only part-time and who are having periods when they
can't work. If someone has health insurance when their income declines to
the point of qualifying for Medicaid, Medicaid will pay their premiums. New
York State saves money, because it is cheaper to provide care to someone
with insurance than someone who has only Medicaid. Medicaid will only do
this if you have insurance when your income gets low enough to be
Medicaid-eligible. Few people will be able to hang on to their coverage as
their income steadily declines. New York State designed the AHIP program to
bridge that gap and help more people make it to Medicaid with their health
insurance, thus saving the state money.

AIDS Drug Assistance Program

If you earn less than $44,000 a year (more for families), New York State
has a trio of programs for you. You don't have to be a legal resident of
the United States to qualify. They are: 1) ADAP, which pays for a large
number of prescription drugs (including protease inhibitors, drugs for HIV
infection and psychiatric medications) and an ever-growing list of
nutritional supplements and vitamins; 2) ADAP Plus, which pays for clinic
visits, lab tests, nutritional counseling, and limited mental health care
on an out-patient basis (as long as you aren't in the hospital); and 3) the
ADAP Home Health Care Program, which provides a limited amount of home
health care (up to $25,000 per person), including homemaking services
(shopping, cleaning, and cooking).

There are two limitations to ADAP coverage. For decades, New York
State hospitals that provide emergency hospital care for uninsured people
have been paidthrough "Emergency Medicaid." If you have no health
insurance and have to be hospitalized, the cost of the hospitalization will
be so great that you will qualify for Medicaid (a joint state/federal
program to pay for medical care for the poor). The first limitation is that
the ADAP program simply does not have enough money to cover hospitalization
or emergency room visits in addition to all the other services it provides.
Therefore, the hospital cannot bill the ADAP program for your care.
Instead, they will bill New York State, and the forms they will fill out
are called "Emergency Medicaid." Second, ADAP payments for clinic
and doctor visits are restricted to their list of accepted providers
(mostly clinics, though a few doctors have started to accept ADAP).
However, if your other alternatives are to pay cash for your treatment,
these programs can be lifesavers.

Medicare

If you are disabled and unable to work, you may be eligible for Medicare
(not to be confused with Medicaid; see below). Medicare has no income
limits, so the amount of your income or savings will not disqualify you. To
receive Medicare, you must first qualify for the Social Security Disability
program (SSD), and have been on SSD for 24 months. To qualify for SSD, you
must be physically disabled accourding to the Social Security
Administration, and have paid several years of FICA taxes from your
paycheck (the number of years varies by your age). If you are disabled, but
don't have a significant work history, you may qualify for Social Security
Income (SSI), but you will only receive Medicare when you reach age
sixty-five.

Medicare, which is entirely a federal program, has two parts: Part
A (which you get automatically) pays hospitals for treating you. Part B
pays your doctor a set fee (more than Medicaid) to see you. When you are
about to qualify for Medicare (in your 28th month of disability), you will
get a letter asking if you want to have Part B and telling you that it will
cost $43.17/month, which will automatically be deducted from your SSI or
SSD check. This may seem like a lot of money, but it is worth it. The
advantage is that you will have a larger choice of doctors.

Enhanced Medicaid

Medicaid is a joint federal/state program to pay for medical care for
individuals with low incomes. It is much more comprehensive than either
ADAP or Medicare. If you have a monthly income less than $575 as a single
person, you probably qualify for Medicaid. If you are on Supplemental
Security Income (SSI) or Temporary AID to Needy Families (TANF), you will
automatically receive Medicaid. There are many changes being made in
Medicaid due to welfare reform, so it's important to track developments in
this area during the next few months. Some people with Social Security
Disability (SSD) may also qualify for Medicaid. If you already have health
insurance when you qualify for Medicaid, Medicaid will pay the premiums.
You can also apply for Medicaid even if you don't receive any of the above
programs. However, Medicaid's application process (or applying for most of
the programs just mentioned) can be difficult to do on your own. It is very
helpful to go to an HIV service organization for case management services.
A good case manager can also figure out what other programs you may qualify
for and advocate on your behalf with all the various bureaucracies.

In New York State, doctors who see people with HIV get a higher fee
from Medicaid. It may be useful to mention this if you are shopping for
doctors and the doctor's office indicates that Medicaid is a factor in
whether or not they will take you. Another option is to get your care
through a clinic or community health center (see below).

Medicaid Co-Payments

The New York State Legislature, in an attempt to lower the amount of money
that the state was paying for Medicaid, decided that people on Medicaid
should have to pay part of the cost of their care. "Co-payments"
are small amounts of cash that you may be asked to pay for various things.
There is a price list, from $1 for an x-ray to $25 to go to the hospital.
Medicaid advocates fought co-payments in court, and the court decided that
Medicaid could charge them BUT recipients did not have to pay them, and
they could not be refused services. If you are asked for a co-payment you
cannot afford, you can simply say "I can't afford to pay the
co-payment." You are still legally entitled to the services, and the
doctor, pharmacist, or other provider cannot harass you for non-payment.

Medicaid Utilization Thresholds (MUTS)

In another attempt to lower the cost of Medicaid to the state, lawmakers
in Albany limited the total type and number of services a Medicaid
recipient can get in a year. If you go to the doctor or hospital more than
you are supposed to or have too many prescriptions, one day they will tell
you that your services have been used up or that you have reached your MUTS
limit. HIV-positive people and people with AIDS are exempt from these
limits. The doctor or pharmacist should have the forms to file a "MUTS
override" for you, which will give you unlimited services. Demand that
they do this.

Community Health Clinics

If you have any of the above forms of payment, some of the best places for
you to find quality care are community health clinics. They generally
accept Medicaid, most insurance plans, and offer sliding-scale fees for
those with no coverage. There are several that offer high-quality HIV care.

Infectious Disease Clinics (IDCs) within Designated AIDS Center
hospitals may also be an avenue to high-quality care. Designated AIDS
Centers are hospitals that have chosen to fulfill additional New York State
requirements and provide a full range of state-of-the-art aids care. If you
get your care through hospital-based clinics, you may have difficulty
seeing the same doctor from visit to visit. You can still get high-quality
care, but it will be important for you to know how to advocate for
yourself.

You must be much more assertive and ask lots of questions about
tests, medications, or procedures that are recommended. Remember that while
clinic staff may be very rushed and have a limited amount of time to spend
with you, they want you to understand your treatment.

No matter what your health history is or was, now is the time to start
paying close attention to health care. Check out one or more of the
programs listed above as a way to pay for your care. If you don't have
health insurance, explore the various entitlement programs available. It is
vitally important that you understand what you are entitled to and that you
get the highest quality care you can find.

You Are Eligible For
The AIDS Drug Assistance Program (ADAP) If You:

Are a New York State resident (you don't have to be a legal
resident of the U.S.)

Are HIV-positive

Have an income less than $44,000 for a single person
(more for families)

Have assets less than $25,000

Are insured or uninsured (you don't have to be uninsured to
use ADAP)

You Are Eligible For
The AIDS Health Insurance Program (AHIP) If You:

Have an income of less than $13,000
(more for families)

Have health insurance
coverage

Are a legal resident of the United States

Are a New York State resident

Are HIV-positive

ADAP Covers:

Over 150 AIDS-related
medications

Pain medications

Psychiatric medications

Nutritional supplements (after seeing
participating nutritionist)

Out-patient visits at clinics
and some doctors' offices

Lab tests

A limited number of mental
health visits a year

Home health care

ADAP Does Not Cover:

Hospital stays

Emergency room visits

You Are Eligible For Medicare
If You Are Either:

Over 65
or:

Have been disabled and
unable to work for 29 months

You Are Eligible For Medicaid
If You Have Both:

An income less than $575
per month (more for families)

Less than $2,000 in
savings or assets

Karin Timour is a freelance writer, trainer, and consultant. The former
Director of Education at Body Positive, she is now Director of the Empire
Blue Cross Conversion Project at New Yorkers for Accessible Health Coverage.

This article is reprinted from Positive Options: A Handbook for People
Living With HIV, published by Body Positive, Inc. It contains comprehensive
and helpful information for people who are HIV-positive. To find out how to
order the book, please call the Body Positive helpline at (800) 566-6599.

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